Sewing, drawing, thinking and writing about life with Ehler's Danlos Syndrome

On Limitations

I will have logged something like 50 hours by around 9:30 tonight, when I will be done seeing the show that opens tomorrow for the fourth–and not final–time this week. It’s not that it is the worst show ever or anything (I am looking at you, West Highland Way), but I think the only thing I watch more than four or five times is Firefly. I am exceptionally tired, and tonight’s viewing is an extra. Normally I don’t attend the preview performance, which is a sort of dress rehearsal with an audience, but we are apparently trying this idea of talk backs in conjunction with preview and our director (you may remember the Retarded Child Emperor) wants me to attend. I find this amusing, and hope that at some point his blood suddenly runs cold when he realizes that he has now taken the risk that I will mention, in public, to an audience, that he fired me from the creative team during the production process.

Imagining revenge keeps me alive, it does.

Prior to coming home, I went with a work study to pull from our stock for the show I am designing this semester, Frankenstein. Stock, for us, is like a nearly 2000 square foot closet full of amazing clothes, hats, accessories and more. It’s a candy store for kids like me, and it’s all, sort of, MINE. It’s also gotten increasingly hard. Five years ago I was a gazelle leaping among racks and boxes, climbing stepladders and hauling things about. Shoving clothes to the side to look at a suit, hefting several items at once up and down, carrying boxes and armloads with no worries. Now, everything I hoist is a choice that is painful and tiring then, and painful and tiring later, too. I keep a 20 year old stationed nearby, but let’s face it, I can’t stick my arms into theirs and make them move through it the way I want. I can have her carry everything I’ve chosen to my car, but I’m the one who spots the right suit and pulls it off the rack to measure it and put it on the rack of things I wish to use.

My shoulders, wrists and ankles will wish to converse with me about this activity for hours tonight. It’s something I used to love doing–the thrill of the chase, looking at amazing pieces of clothing, re-acquainting myself with favorites that we own and that we’ve built. Now it’s an endurance test, and an exercise in helplessness. All of that would probably be okay, if I were home for good now, instead of planning dinner and waiting to go to the show. It might even be okay if I were going to the show, but not going tomorrow, for opening night. But, right now, I hold two tickets to a sold out show, and I always go to opening night.

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In other news, I had the last visit with the Shrink on Monday. It was suitably awkward. At the end I stood up to go and she followed me as she does and then she asked if we might hug, which we did, and then I inwardly berated myself for failing to hug in the first place and realized I had already broken the agreement that I was going to carry out of that session a new dedication to not making myself feel stupid. I’m the dog who eats the obedience school certificate of completion and then pees on the rug.

I have made an appointment with the new shrink, but find myself resistant. I am loathe to start all over again. I don’t care for her intake form that is very focused on how much I drink and do I ever think I should stop and how much, really, do I drink? Too much, madam, that is the answer. Who doesn’t question even decisions they are (mostly) okay with? Get out of my head already. I feel like her form is seeking problems and I am not seeking therapy because I drink too much or something like that, I am seeking outside support as I deal with a permanent, un-treatable, degenerative, chronic-pain condition. It’s going to be what it’s going to be, I just need to dump some of it on someone-not-my-spouse.

I wish to be greeted as equal, is what it comes down to.

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My PCP had me get x-rays of my hands, neck and shoulder last week. On Monday his mother (also the office manager and yes, you do see where this is going, don’t you?) called to give me my results. She gave them to my voicemail, and said that everything was “fine.” “It’s fine, Gwen, just fine. Let’s see (crinkling paper sounds) your neck has a little bit of degenerative process and your hands are fine except for some degenerative process–that’s just arthritis, hon–and your shoulder is normal.”

Um.

Do you know how many “Not Okay” wands I break in a single week? I have to hit so many people so many times, I go through them like water. Also, it’s not long enough to reach all the way through the voicemail and the cell tower to find his mother with her diet Coke and smack her nose. I texted him the next day about the veritable not okayness and he said he’s called me.

No, of course he hasn’t. And tonight I have to go to the show, with my aching (yet normal!) shoulder and my aching (but mostly okay!) hands, and my wrists which we’ve never looked at and my ankles that look like I retired from a lucrative pro-football career. Where, after watching a show wherein I spend a huge amount of time feeling bad for the rabbit, I need to try not to tell the audience that the retarded child emperor (with a beard like a Monty Python lumberjack) fired me from his stupid project.

About Guenevere

I am an artist, a stitcher and a costume designer expressing myself through design, costuming, sewing, drawing and teaching. I also have Ehler's Danlos Syndrome, Type 1, and suffer daily chronic pain, degenerative changes to my joints, IBS, POTS and likely MCAS. Life is one big picnic.